Communication of Biobanks' Research Results: What Do (Potential) Participants Want?
Communication of Biobanks' Research Results: What Do (Potential) Participants Want?
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DOI：
10.1002/ajmg.a.33617
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发表时间：
2010-10-01
影响因子：
2
通讯作者：
Smets, Ellen M. A.
中科院分区：
文献类型：
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作者：
Meulenkamp, Tineke M.;Gevers, Sjef K.;Smets, Ellen M. A.
本研究的目的是调查（潜在）研究参与者（a）关于接收生物库遗传研究结果的信息偏好，以及（B）对研究人员交流研究结果的责任的态度。共分析了1，678例患者，包括一般荷兰人群（N = 1，163）和哮喘、鼻炎和血栓形成患者（N = 515），这些患者完成了一项调查，包括6项虚构的遗传研究结果，每项研究结果均显示为总体和个体结果，可治疗性和疾病种类各不相同。五个问题评估了研究人员对交流研究结果的责任的态度。此外，还测量了背景特征。大多数答复者希望收到综合结果以及个别结果。一小部分人（59%）认为研究人员应该在不对健康产生影响的情况下传达个人结果。三分之一的人同意只有在可以获得治疗的情况下才有信息义务。个人结果的偏好和有利于交流结果的态度都与属于一般荷兰人口，而不是一个病人，希望了解自己的健康作为生物库参与的原因，监测应对方式，对健康信息的普遍愿望，遗传信息的意义和没有预期的焦虑。相当大的多数受访者表现出对个人结果的高度信息偏好，即使不清楚是否有治疗方法。很少有人认为研究人员应该使这成为可能。生物库的沟通政策应注意（潜在）参与者的高信息偏好和期望。(C)2010 Wiley-Liss，Inc.
The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N = 1,163) and patients with asthma, rhinitis, and thrombosis (N = 515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results. Additionally, background characteristics were measured. A majority of the respondents wanted to receive aggregate results as well as individual results. A small majority (59%) held the view that researchers should communicate individual results with no health consequences. One third agreed with an information duty only when treatment is available. A preference for individual results and an attitude in favor of communicating results were both associated with belonging to the general Dutch population rather than being a patient, wanting to learn about own health as the reason for biobank-participation, a monitoring coping style, a general desire for health information, perceived meaningfulness of genetic information and no anticipated anxiousness. A sizable majority of respondents showed a high information preference for individual results, even when it is unclear that treatment is available. Fewer were of the opinion that researchers should make this possible. For their communication policy biobanks should take notice of (potential) participants' high information preferences and expectations. (C) 2010 Wiley-Liss, Inc.